Chronic illness: the parts we don't talk about

Tag Archives: Chronic illness

So if you’ve been following my blog you know that I am the queen of “give it time” and “fight for help”.

Waiting for your child’s health to become stable, for them to start eating, to stop vomiting…. it takes a multidimensional approach and time.

And sometimes, you just need to get in the doctors face and say “enough”. Now you need to listen to me and do something about the vomiting, not eating, etc.

It’s a balancing act and it requires a lot of strength, patience, and fortitude.

Well, it turns out that I’m pretty good at doing that for my daughter, but not so good for myself.

My endometriosis, IBS, and depression got really bad a couple of years ago and I took action. I tackled the IBS which helped the depression (did you know that there is a link between inflammation and depression? Well that’s were my depression was coming from and I changed my diet to reduce inflammation en voila, I felt physically and mentally better).

The diet change for the IBS has also alleviated some of my endometriosis pain. It’s brought it back from constant and excruciating, to just pain most of the time and manageable (manageable for someone whose just so glad not to be in pain everyday).

Which means that for the gynaecologist I saw in Jan, I am no long “sick enough” for them to offer anything other than pain ills and contraception.

Nice. I’m contraindicated for both. Thanks Mr and Mrs Specialist. How is that I understand my illness and medical records better than you?

So I’m currently caught in this other type of balancing act:

If you help yourself, you are no longer sick enough for the doctors to help you

If you don’t help yourself in every way you can, then you are in a lot of pain

How do I find that sweet spot between

being seen as ill enough for the doctors to actually do something

and

not being in excruciating pain?

LIE. Just lie about it.

That’s another balancing act for people with chronic illness:

Truth versus Honesty

So at my next appointment I’m going to describe how it used to be. Pretend that I still have it. Because endometriosis is a progressive illness, and it creates inflammation in the body.

The truth is, I need help. But honestly, it’s not as bad as it was.

But as I wait, I can feel it getting worse. Both the physical pain and my mental state.

And do you know the worst thing about depression? It robs you of your will to do something to help yourself.

Actually, this is the worst thing: you start to feel worse. You are also quickly losing the capacity to take action and help yourself. You feel the darkness coming and you do nothing.

Well, I’m not doing “nothing”. For starters, I’m writing about it. Writing really helps me to get clear about what’s going on in my head, in my body, in my soul. It’s a way for me to figure out what to do next. So now I know. Lie my pants of and make the doctors help me.

You’ve been busy lately and you’re winding down and settling into some rest and recovery time.

Then something terrible happens: you get an invitation. To a party. With other people, probably also people you don’t know and who don’t know you.

If you are asking “why is this a problem?”, then you have never run out of spoons before.

When you are chronically ill, management of your spoons is important. And so is living a full, happy life. And we want it to be full, don’t we?

So this invitation has come along when you are just out of spoons. You yearn to go, let off steam, have some fun. Your good friend has turned into a devilish temptress telling you

it won’t be the same without you. please come. We’ll all have a fantastic time if you are there

Now, even if they don’t say those exact words, it may feel like this. Because you want to go.

To go or not to go. That is the question.

Do you say no? Disappoint them? disappoint yourself? But take care of yourself because you’re out of spoons and what you really need to do is chill out and rest.

Or do you say yes? And go, enjoy yourself, but in the process get so used up and knackered that you are going to spend a week in bed. Silently wishing for an adult nappy

so that you don’t have to get out of bed to pee…

(No! not in that adult baby fetish way. I was going to add a picture for a laugh but I googled it and it was just too disturbing.)

And if you say yes, you’re going to have to borrow against future spoons, using energy you don’t have yet so that you can stand upright, smile, laugh. But borrowing future spoons is like borrowing money from the mafia.

The interest on your future-spoons loan is going to cripple you.

That simple invitation has turned into a poisoned apple.

Finding Shades of Grey

Now I’ve been living with a cocktail of energy draining, sometimes debilitating illnesses for some years now (IBS, Endo, depression, perfectionism and its burn out consequence) and I’d be a hermit if I hadn’t learned to adjust. And with my eldest daughter having a seriously intensive chronic illness, I couldn’t afford to keep on using up my spoons. I had to make a change.

I have always been a full on, “if you’re going to do something, do it well” kind of person. And although I thought I was lazy, my standards are sky high (that’s why I consider perfectionism an illness).

I was a very black and white thinker. But luckily for me, my eldest taught me how to think in grey.

So now when I get that invitation, there is another dimension to my choice of go/don’t go. I have multiple options:

I can go and be lively, chatty and dare I say funny.

Or I can go and find a comfy chair and chat quietly to one or two people.

I can go for an hour. ok, it always ends up longer but I blame that on my #shopkeepersyndrome (you’re the shop keeper so you can’t leave first, you need to be there for others and need to be the last to leave – when it’s closing time and you have the keys). But I can now leave a party early.

I can stay at home and arrange to see them another time.

I can just say no, no explanations, but I’m sorry that I can’t come.

I can even stay at home and actually rest, go to bed, sleep.

So many shades of grey. So many options.

None of them requiring me to resort to adult nappies because I’m too exhausted to get out of bed.

This blog is all about living with chronic illness but what happens when you get better? It should be party time right? Life is wonderful. This is what we have been praying for. It’s celebration time, come on! (cue Kool and the Gang).

Yet, it’s not all party and celebration. You actually land in a world of mixed feelings. You’ve lived with this for so long, and now it’s gone. A big part of your life has disappeared and it’s replaced with emptiness.

It’s not a sad emptiness though. It’s kind of exciting. It’s a

Oh my god, what can I do with all this extra energy?

kind of thing.

And with that excitement comes some fear. You see, there is comfort in the known. Better the devil you know and all that. In this emptiness, anything is possible. So that means it could be both good and bad. And it probably will be both good and bad.

There are two common thoughts that run through our heads and I experienced them both last year.

Is this really over?

Oh my god, it’s over. What now?

1. Is this really over?

in 2014 I started an exclusion diet for my IBS. I was in pain everyday and the inflammation was making me depressed. As in, need medication because I don’t care to live, depressed. Cutting out foods from the high FODMAP list really helped. And by June 2015 I was symptom free. It was an amazing feeling, to be pain free! I was in an almost constant state of bewildered surprise, thinking

So this is what it feels like to be normal?

Until September. When my endometriosis hit a tipping point and triggered my symptoms again. So I’m actually now back to daily pain. I’m still excluding the high FODMAP foods (otherwise it would be excruciating). The pain is also different. I can feel that it’s coming from the endo; its a very specific kind of pain.

So, it’s not really over. Not this pain. And while I really enjoyed those pain free summer months, I still feel a little bit knocked down that all my work didn’t lead to a cure. But I’m picking myself back up. It’s a slow process; the drop from my euphoria was quite high.

2. Oh my god it’s over, what now?

In October last year I came of my depression meds. I was on them for 1 year. Although I hated the being on them, the hate was aimed at the necessity and the side effects. My mood was stabilised but it was stabilised at a constant, low level grump. I had a small frown on my face all the time.

And I was constantly hungry. I wanted (and did) eat all the time.

My main therapy was my exclusion diet and it worked. IT WORKED! I’m still so excited about it that I needed to shout that. Certain foods that were causing inflammation in my gut (hence the IBS) were also affecting my brain and mood. I can guarantee now that if I eat gluten, I will become miserable (I just did a gluten test with spelt at the new year and ended up feeling like my life was pointless).

So in October I came off my meds. I was so excited about doing this, and yet there was a whisper of concern. Subconsciously I was thinking

I’m never going to feel sad again. I can’t feel sad again because now I’m cured.

It doesn’t make sense but this is what was going through my head.

If I don’t need the tablets anymore, then I must be happy.

Which is true, but there was a hidden “Always” in there. That I must be happy, always.

Now that I had finally reached this stage, I am no longer depressed, it was scary.

So what am I now? My depression didn’t define me, but it also took up a huge amount of my energy, time and attention. Now that it’s gone, it’s left a big hole. This leaves me with the big philosophical question of

What is my life all about? What’s next?

So yes, I know and have accepted that I will feel sad, blue, down in the dumps. It’s normal. It’s the blackness, the heaviness, the apathy that has gone.

So now I’m enjoying the absence of apathy and blackness. I’m having a look around at the colours. I’m trying to figure out what to do with all this extra energy I have.

I must confess, this last week I wasted a lot of it. I’ve been so used to struggling that I became a little lost. And the irony? I struggled because the struggle was gone.

So if you know someone who has just had good news about their health, please don’t be surprised that they are not celebrating.

They are wondering if it will last.

They are coming to grips with the vacuum.

Don’t expect them to be over the moon. Don’t expect tears of joy. It will come. Give them time.

But most of all, I am grateful that F has finally had a mickey change experience that was not traumatic, frightening or painful.

I’m not sure how long we will need to keep using the laughing gas and the spray, but knowing a timeline doesn’t actually help. What I do know is this: finally we have found a way to make a very necessary procedure easier for F. We are not adding to the trauma any more, we are gently and ever so slowly, showing her that it doesn’t need to hurt. She doesn’t need to be afraid. Not of this.

In an attempt to not try and solve all my problems by myself, I went to the gynaecologist today. Warning: contains references to lady gardens and annoying doctors.

It’s always such a weird experience. They ask you to go behind a little curtain to take off your trousers and knickers and then just expect you to walk back into the room with your butt hanging out. Why even have the curtain?

It was only as I was hanging my butt out that I realised that not only do I need to trim the rose bush in my garden (literally. the branches are too long and the kids can’t get to their play house anymore. Yes! I’m talking about a real garden here), but I haven’t been paying attention to my other “gardening” needs. The lawns a mess and my legs are so winter ready that I can plait them.

Well, f it, I’m going to be uncomfortable, we might as well both be uncomfortable.

When I made the appointment I didn’t give any thoughts to maintenance or what “it” looked like (I mean, apart from those who vagazzle, who does?). My primary thought was, will they actually help me?

And after the pokes in the belly and examinations into too many holes, I’m back where I started: I’m going to have to figure this out for myself.

My endometriosis is getting steadily and painfully worse. Still, the only options they gave me are are hormones/contraception or pain killers.

With the severity of my morning sickness with S, I’m not touching hormones and the pain killers are just going to make my IBS worse. And honestly, it’s the IBS that I’m trying to fix.

IBS has many causes and I have successfully dealt with the food related causes. Drastically changing my diet and excluding the WIDE range of foods (thank you Montash University and your fodmap app) meant I was completely symptom free from July to Sep this year. Woohoo! That’s after years of constant symptoms. I never thought it would work. But it did.

But my endometriosis is getting worse and since the summer, the pain has gone up drastically. My IBS symptoms, although a little different, are back.

And my poor gut health lead to my poor mental health. And I’m not going back there. My mind means too much for me to lose it again.

Which is why I was prepared to get poked and prodded today. Because IBS is a symptom of/caused by endometriosis.

So what did this doctor tell me today?

There is no link between endometriosis and IBS.

WTF? Every teenage girl in the world knows there is a link between menstruation and digestion: we feel it every month.

This whole appointment really triggered my

“oh for f*cks sake, I’ll do it myself” reflex.

It’s a really strong trait of mine that I have been learning to let go. And I’m getting pretty good at it. I am a reformed perfectionist after all.

But even as I was muttering to myself

why did I bother?

I realised that the problem wasn’t with asking for help. I just clearly asked the wrong person.

So now I’m on the hunt for someone who does understand the link, that is willing to look past the standard approaches, who’s willing to work with me to find a solution that fits my needs.

So wish me luck. I have no idea where to find them. But my mind is at stake so the quest begins.

p.s. perhaps it wasn’t fair to ask him if he’s ever had a period. But if only I could get him into one of those labour simulators… then maybe he’d see living with pain, cramps and IBS a little differently.